Recognized each April, World Autism Month aims to increase awareness and acceptance of people with autism.
Spartan Caregiver Support, a new Michigan State University program is providing free informational support and resources to autism caregivers across Michigan.
For members of the autism community, the COVID-19 pandemic presents a particular set of challenges. Social distancing, school closures and stay-at-home orders have left caregivers of people diagnosed with autism without behavioral or social support.
The recently launched Spartan Caregiver Support offers caregivers the opportunity to schedule free, 15-minute sessions via phone or video chat with a behavior analyst. Among the areas covered by the service are discussing behavioral concerns, developing daily routines and assisting with communication difficulties. The informational resources also will be available from the Spartan Caregiver Support website and email list as the program continues to expand.
Program Director Matthew Brodhead is an assistant professor in the Department of Counseling, Educational Psychology and Special Education and a fellow in the Center for Research in Autism, Intellectual, and Other Neurodevelopmental Disabilities. He was inspired to create the program after the federal government decided to reduce barriers to delivering telehealth services.
“I knew we could use readily accessible platforms to reach people, and I thought this would be a good opportunity for us to help,” Brodhead said. “There are all of these families caring for children with autism who are in the same position, and I can’t imagine how they’re feeling. If we can reduce even the smallest amount of stress from their lives, we can make their days go just a bit better.”
While similar programs take months to develop, the COVID-19 pandemic required swift action. “We wanted to be responsive to the moment, and so we’re trying to do as much as we can to get the word out,” Brodhead said. As a C-RAIND fellow, Brodhead is among dozens of faculty members across MSU’s campus with a vested interest in improving the quality of life for people with neurodevelopmental disabilities and their families.
C-RAIND Program Director Angie Kankula said having a network in place helped the Spartan Caregiver Support program get off the ground quickly.
“With the fellows, it is like its own network, bringing in different resources and researchers across campus together,” she said. “The faculty already had the infrastructure there, so they could implement their idea and meet the need. It was effective in increasing the response time.”
Families across the world are feeling the disruption of their regular routines during this pandemic; but for families with autistic children who thrive in routine, the sudden lack of predictability brings them additional stress. Spartan Caregiver Support aims to provide homes with a sense of stability, from reestablishing routines to teaching calming skills. “We imagine there has to be thousands of people who are at home with their children with autism and need support,” Brodhead said.
Brodhead and some of his students have been assessing demand for appointment time frames and frequency in the early weeks of the program. Since its launch, hundreds of people have visited the website, and many have signed up for the email list. Brodhead says families can continue to sign up for the free weekly sessions.
“We’re going to be able to provide information and support, but we’re not going to be able to replace a more formal or ongoing type of consultation. We see ourselves as an addition to other resources people in the community might be getting, but we would be happy to talk to families as often as they would like.”
While Spartan Caregiver Support was born out of an immediate need, Brodhead hopes that the project will continue to grow beyond the COVID-19 pandemic. “We’ve tapped into something the community really wants,” he said. “We’re building this in a nontraditional way, but these are nontraditional times. I’m doing it all with the frame of mind that it could sustain itself once this is all over and still be a continuing service to the community.”
Spartan Caregiver Support currently services Michigan residents, but the model created by Brodhead and his team has the potential to help caregivers across the country. Brodhead has spoken with researchers from Rollins College in Winter Park, Fla., and a statewide provider in Illinois about the outreach effort.
“Once we get our documents and processes lined up, my goal is to make all of this open science and open source,” Brodhead said. “If anyone wants to take this model and use it in their community, they would have access. We have a responsibility to take information, develop the resources we gather and make that publicly available to whomever would want it.”
Spartan Caregiver Support is one of several initiatives developed within the MSU community in response to the COVID-19 pandemic.
“I keep hearing so many things about all of the wonderful efforts that MSU researchers are doing, where people have dropped their entire programs of study to conduct work to help with the pandemic,” he said. “There is something about being a Spartan that when times get tough, we become innovative and have the persistence and ability to rise to the challenge and help the community when it is in need. I’ve always been proud of the work that we’ve done, but this is the moment where we need to deliver to the people.”